We’re hosting a dialogue series this week, between parent Robert Rummel-Hudson, author of Schuyler’s Monster and blogger at Fighting Monsters With Rubber Swords; and self-advocates Zoe, blogger at Illusion of Competence, and Ari Ne’eman, President and co-founder of The Autistic Self-Advocacy Network. Why? Because it needs to happen. Because being a parent of a disabled child is not the same experience as having a disability, and we need to figure out how we can have productive conversations about that disconnect — especially when it affects our ability to work towards common goals. Building constructive conversations and creating real social change isn’t a garden party — it is hard work. It requires steely listening, forcing ourselves to bench purely defensive reactions, and honestly trying to understand unfamiliar perspectives and direct criticism. It might require walking away from the screen and giving yourself time to process, and that’s fine. You don’t have…
Month: September 2011
Spectrummy Mummy SpectrummyMummy.wordpress.com Our family of four recently moved from the U.S. to South Africa. This isn’t our first international move, but traveling with a toddler with sensory issues, and a preschooler with an autism spectrum disorder complicates matters. Before we left, I referred to our journey as The Flight, and much as it deserved capital letters, it disguised the fact that there were in fact two flights. The first was a tiny domestic flight under two hours, the second being a mammoth fifteen hours. So in my preparations, I concentrated mostly on the big one. I assumed the first flight would be easy. I was wrong. We’d had a couple of hiccups before boarding. The van that we booked to collect us was late, and we were all waiting in the D.C. summer heat for over half an hour. To say that the kids became irritable doesn’t really do…
Jennifer Byde Myers www.jennyalice.com My son Jack is a long, lean, boy with an odd gait and a subtle smile. His first diagnosis was benign congenital hypotonia, which was later upped to cerebral palsy, ataxia. He added his autism diagnosis just after he turned three, about the same time he began to walk. He can spin a plate over and over again, but he can not yet stab a piece of food with a fork. He straddles the worlds of ‘autism’ and ‘special needs’; stimming, using a wheelchair as necessary when his muscles are too weak, or when the environment is too bustling. He’s a young man of few words, unless he does say something, at which point he is always relevant, and often wry. I’m his mom, so I can generally guess what he needs, but communication is a struggle; it can be hard for him to clearly share what…
Corina Becker autisticsspeakingday.blogspot.com It started sometime mid-October last year. I was browsing the internet, following links off of Twitter to new places I hadn’t been, when something caught my eye. A new autism awareness campaign, it advertised itself as a way to raise money for charities around the world and for people to understand autism better. Curious, and ignoring the growing dread in the pit of my stomach, I clicked the link and took a look. What I found was Communication Shutdown, an event started by a group in Australia that promoted people to refrain from going on social networking sites such as Facebook and Twitter for one day, November 1st. It said that it would help people to understand the communication difficulties that people with autism struggle with, and this will help people to know autism better. Also, for a $5 donation, people would get a charitable app to…
KAL autismtwins.blogspot.com I am alone for the first time in months. Hello silence! How I’ve missed you. Which also means: Hello self! There you are! How are we feeling about being alone? Should we eat some ice cream or should we write. I’ve carried half-written posts around in my head all summer, never finding the space or time to sit down and share them. My boys turned seven. We had a lovely family vacation and I sank into brief breaks here and there — a book on the beach, a stroll on the sand — but nothing quite beats the sound of silence for this weary mom. Back to school brings with it the familiar angst, the wringing of the hands, the transition to something new. We’re in second grade. The amount of worrying I do as back-to-school ramps up is ridiculous. Ridiculous. It helps when I hear that I’m…
Sarah Macleod quarksandquirks.wordpress.com findingmygrounduu.wordpress.com aspergersathome.com “I love you,” I’d say. “I love you, too,” he’d reply, often snuggling into me speaking the sentiment with his body as much with his words. It’s been over two years since we’ve shared that exchange. Two years — perhaps three — since I’ve heard Bryce, my son with Aspergers, now 10, tell me he loves me. I’d be lying if I said it didn’t hurt. If I said that it was just words and that I don’t care about the words, my nose would grow like mad. Truth is, I know he loves me, but I ache to hear him say it again. On a recent night around the dinner table during a visit with my mother, the subject of love arose. Bryce pronounced, “I don’t love anyone.” Now, my mom is hip to the blunt mannerisms of my Aspie son, so she didn’t…
Four weeks ago, Syracuse University hosted its first regional Neurodiversity Sypmosium, with Ari Ne’eman as the keynote speaker. Mr. Ne’eman is President and co-founder of the Autistic Self-Advocacy Network, as well as a presidential appointee to the National Council on Disability. He spoke both fiercely and wittily about both neurodiversity and self-advocacy in the past, present, and future. TPGA is publishing a series of excerpts from Mr. Ne’eman’s talk. This is part three. Part one was published two weeks ago, and focuses on the history of the disability rights movement. Part two centers on power and perception, about how “…in the autism world, what autism is — and what we should do about it — is very much under conflict.” In part three, Mr. Ne’eman talks about the divorce of the autism conversation from the larger developmental disability conversation, the tyranny of “normal” expectations for Autistics, and the shared hopes…